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03-14-2009, 02:33 PM   #31
kello82
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kev-hmm. lots to think about it seems. i 100% agree with your thoughts on experiments. i have always tried to only make one change at a time. after making the mistake of multiple changes earlier on in my disease and then never knowing which practice was the one that improved my condition. i guess i really have to mull this over. i have about a month before the sugery decision will be made, so i will mention this and see where it goes. i see that its kind of a "touchy" treatment, for lack of better word, and i feel like my GI is not one to prescribe one such as that. but, in the end i know it isnt his choice. its my colon thats gonna be gone not his!
anyway, thanks a bunch for your advice. its so much more valuable information than what you find by googling the drug.

miss- thanks for your story as well.
the fact that both you and kev got relief from your severe condtions gives me hope that it might help me too.
03-14-2009, 06:35 PM   #32
D Bergy
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Here is an interesting LDN stoy fom a doctor who has been prescribing it for some time. Link to full article below.


JULIA SCHOPICK – Tell me how you started working with low dose naltrexone and alpha lipoic acid together?

DR. BERKSON: Let me tell you how I found low dose naltrexone. A man came into my office about 12 years ago. I’d worked for the Department of Defense as an internal medicine doctor out at White Sands Missile Range. I’d been there for several years and I thought, “I’m going to open a small practice close by in Las Cruces, New Mexico, do what I think is right, not argue with anyone, or fight with anyone at the universities, and just try to do a good job. One day, a man came in with a walker. He could hardly even move. He was about 70 years old. I asked him what was wrong, and he told me that he had just been to MD Anderson Cancer Hospital, and they told him he had metastatic prostatic cancer -- metastatic to his bones. But he also had lupus and rheumatoid arthritis. They told him he only had a few months to live. Nothing could be done. So I asked him, “Why are you in MY office?” He said he had a wife with dementia and a son with a mental disability, and he had to have them placed in a nursing home before he died. I asked what I could do for him. He said he really needed some narcotics to handle the pain. I said I’d be glad to write that prescription for him.

Then he asked me if I’d ever heard of Dr. Bernard Bihari in New York. This was 12 years ago. I said no, I never heard of him. He told me that he had heard that Dr. Bihari was curing cancer. I said, “I don’t know why you're in my office, or MD Anderson or the Mayo Clinic. I don’t see any great results for curing cancer from any of these places. I don’t know how to cure cancer. They treat cancer at MD Anderson and at the Mayo Clinic, but I haven't seen any great results with complicated cancers. So why don’t you go up and see him?” So he said, “Well, he’s just in a little office in New York. What does he know?” And I told him the story of when I was at a university hospital with alpha lipoic acid, which was really effective at regenerating livers and many other organs, too, and they just didn’t want to hear about it. They were in the liver transplant business. So I said, “Maybe if he was at a big medical center like Sloan Kettering or MD Anderson, and he discovered a simple cure for cancer, they'd probably throw him out, because it would put them out of business.” So he went up and saw Dr. Bihari. And I didn’t see him for 3 years.

Three years later, he walked in, without his walker, a normal guy. I said, “John, how are you doing?” And he said, “You know, the wind’s blowing, my nose is stuffed. I really need something for these allergies.” I said, “No, John, what about the cancer?” “Oh, Dr. Bihari cured that” – in a very relaxed way. I said, “What about the lupus and rheumatoid arthritis?” “Oh, he cured that, too.” I said, “What did he use”? He said, “Did you ever hear of naltrexone?” I said, “Sure, it’s something I've given to heroin addicts, because it occupies their opiate receptors. When they shoot up, they don’t feel the heroin.” He said, “Well, Dr. Bihari found that if you take a tiny amount of naltrexone, a very low dose, and you take it at bedtime, it sort of tweaks the opiate receptors in the brain and on the immune cells and by morning, it modulates the immune system to reverse autoimmune disease and it seems to stop many cases of terminal cancer from growing.”

I was very skeptical. But my wife had two aunts who had lupus and rheumatoid arthritis. They were actually on chemotherapy drugs, like methotrexate, and steroids like prednisone, that swelled them up. And the methotrexate was killing their bone marrow, affecting their heart. And they weren’t getting any better. So, I asked them if they wanted to try this low dose naltrexone. They said, “Sure.” In one month, they were completely normal, off all drugs, and just taking this $12 a month prescription.

Then we had maybe 100 patients who were rheumatology patients with lupus, rheumatoid arthritis, dermatomyositis. I would say that within one month, 95% of them are off all medications and feeling normal.

http://tinyurl.com/djyldv

Dan
03-16-2009, 12:37 AM   #33
mRae85
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Wow, for the most part this stuff really does sound like a "wonder drug" I am sure the Dr will want to put me through every other option first but with me living only 2 hours from pittsburgh PA and going there all the time, I might be able to skip the other treatment options and go right to this one, I would like a few more people to say it is a sure thing tho... like someone else said : 1 good story is nice to hear, but 2 people or 3 or 4 is going to pull more weight.

Also katiesue and a few others have said "when they were on it" does that mean it is in fact a "wonder drug" that might not always be wonderful?

I am just now starting to hear about LDN, funny... I have heard of alot of treatment options here that I had never heard of before, I think the Dr should hand out "treatment option" booklets to you that inform you of all this, then again I guess they don't want you to know or they want you to find them all for youself so they know you are serious about getting help. I agree with kello, "its my colon that will be gone, not his" ! Dr's always have the final say so and it is the patient who is left to suffer, so sorry to hear things are desperate for you right now kello If I hear of anything I will be sure to post it, on LDN or anything else.
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03-16-2009, 07:05 AM   #34
Miss
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LDN, just like any other drug, does not work for everyone. Statistically, seventy percent achieve total remission and about twenty percent experience sleep difficulties.
Sleep issues the first few weeks is really the only side affect and only in twenty percent. I had some dreams, nothing scary. Now I sleep better than ever. I didn't even get up to pee last night, slept real sound all night long and feel totally refreshed.

Miss
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39 yr. old homeschooling mom of 3
Diagnosed Crohn's 06/08, then UC 08/08
Asacol made me worse, severe reactions to Remicade
Currently taking LDN since 10/08, doing very well
www.lowdosenaltrexone.org
03-16-2009, 09:46 PM   #35
D Bergy
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I had to find a doctor to prescribe it for me. My Gastroenterologist would not go along with it. But , I am at least as stubborn as he was and will find a way to do what I am after.

At my age, I certainly am capable of deciding what I will and won't take and I have been screwed by relying on doctors before. I find a doctor that is willing to work with me, I don't need direction, just information and suggestions and testing.

It is not like I made the decision lightly. I spent several months researching and treating myself beforehand. I research these things to death. I spend 10 to 12 hours a week researching Crohn's and a few other relevant diseases. I have done this for over six years for Lyme disease and the last three for Crohn's, Hidradenitis, Celiac, Arthritis, Ankylosing Spondylitis, etc.

Nothing came close to risk benefit ratio that LDN presented. That did not mean it would work for me, but nothing else carries a guarantee either. I have used riskier treatments and LDN was Kool-Aid compared to other things I have used.

If you are in or at least near Hershey, PA, you could get in on the new study on LDN.

Dan
03-16-2009, 10:14 PM   #36
mRae85
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Well, if no one read it on any other post then I will give the details here. maybe due to all the Dr's I have delt with in my past I went in today with determination and for the most part ready to get another "new Dr" because I figured he would simple dismiss the idea before even hearing what "LDN" stood for. I was how ever very surpprised, he took it all in with an open mind and I think half of that was due to a student Dr that was there today (dont we all love those student Drs, I mean sure they need to gain exp but c'mon, we aren't there for the common cold, ya know?) Anyway... as i was saying I actually liked this one! She is about 4 months from getting her final license and all but anyhoo, she actually went to Hershey for a school project or something and got to interview the woman up there so she knew all about LDN AND....AND... her mother has Crohns!!!! She told me that with my current condition with Crohns, she would think it would be an exalent idea for me to get on LDN now due to it being one of the safer and more effective treatments. She told me though that her mothers condition was too far advanced and that was upsetting, her mom is on remicade and she said that the infections that her mom gets is always stressful and opened up to me about how even though so far she did not have cancer it was always a worry that one day it would go in that direction ! She was really insightful about Crohns in general (for once I didn't have to teach the student Dr what it was she just knew what to ask and where to poke and how hard to poke and everything) and it was nice to see a Dr that had emotion, so it was a mutual feeling that we were happy to meet. So she apparently briefed my Dr before he came in about LDN and he was REALLY open minded and couldn't waite to get in touch with the woman in Hershey PA, so I am sure I will be posting here again once I hear more about that. I couldn't have dreamed of a better responce though out of a Dr, with the way I have been through them I seriously didn't have any high hopes!

Miss - I dont sleep very well as it is due to pain so....

D Bergy - this is my family Dr I am talking about also, my GI and I dont get along at all, I see him when due for colonoscopy and that is it! Im only 24 but i agree, I am old enough to say what I will and wont take also, thank god I finally have a Dr that is willing to agree though because we all know that in the end what they give us is what we are stuck with or we get a new Dr. Believe me, I handed him every prnt out I could and even highlighted the URL for him to go check out himself, he is very excited to do so also
03-16-2009, 10:17 PM   #37
mRae85
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wow... sorry that was so long ...... got alot on my mind tonight I guess, both good and bad... but I also wanted to add, I will be checking this thread anytime I notice a new post so please keep this going and keep gathering information and for those of you on it now, PLEASE keep us all up to date on any and all good or bad things you notice
03-16-2009, 10:26 PM   #38
D Bergy
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It sounds like you have found some good doctors to work with. Hang on to them as they are very rare.

I may have found a local doctor to give write me my LDN prescription. No more trips to Chicago. I can do without the 700 hundred mile drive.

Keep us posted.

Dan
03-16-2009, 10:44 PM   #39
mRae85
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yea, 700 miles is a biggie

and I must add, aren't you mr. popular around here, I tried to send you a Pm but couldn't because you are maxed out
03-17-2009, 08:37 AM   #40
Miss
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I've seen quite a few posts on the LDN group from crohnnies with pain that it's the first symptom to subside. I never had pain at all, blood loss and D are my problems. Most of the people said pain subsided in the first week or so. That would be a big plus for you if that's what's keeping you up. I have been sleeping very good lately and loving it.
I was in for a check up yesterday and things are very well, got my refill. I'm good to go for the next three months!

Miss
03-17-2009, 08:16 PM   #41
BillthePill
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Location: Saint Paul, Minnesota
Update: Met with a new GI today, I was referred to him by my GI for a second opinion. We agreed to cut out the Humira, and we agreed we would give Methotrexate a shot, I will begin my taper from 50 mg of pred soon, and will tell for sure if its working it a couple in prolly a month and half or so. So far i cant tell if its helping crohns wise but i certianly can feel the side effects. For example, my eyes are burning right now... seems to be happened about once a day lately.

This new GI helps people get placed in clinical studies, so I was hoping he had heard of LDN, he didnt. I showed him the Penn State abstract, among other things, he did read them. He said some predictable things like its just not proved etc. But also said he was 'open' to new/different treatments ect, but said he would rather see me in a clinic trial. I told him im fine with that down the road, but tried to make it clear that wouldnt happen until I tried LDN with or without his or my main GI's support(ie prescription).

So i guess I'll try the metho a little longer even though i have little hope for it, also assuming it does work, im worried I may be missing out on a better treatment (LDN) which assuming it did work would likely provide a better quality of life because of the lack of side effects/ not suppressing the immune system.

It's only a matter of time before I try LDN, whether its after i complete the taper or have to stop metho because of liver issues. But i have atleast laid a couple seeds among some GI's that havent heard of LDN and maybe they will be more open to it in the future for myself or others as another treatment option.
03-17-2009, 08:44 PM   #42
D Bergy
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I did empty out my inbox. I'm not real good at cleaning up after myself.

I hope the Methotrexate helps you out. It is just a matter of time before something works well for you.

Dan
03-19-2009, 07:43 PM   #43
Kev
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Location: Halifax, NS, Canada

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My options (from my wonderful GI) were metho or (after I convinced her to look at it) LDN. She agreed the risk of LDN (tho unknown) were far less than metho. I think it helped that the AZA had previously put me in emergency, so being fearful of potential side effects took on a lot more relevance. Not all doctors have their heads buried in the sand.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-23-2009, 04:51 AM   #44
mRae85
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Good to know you cleaned out the inbox, now for me to remember what I was going to say to begin with

I am just really scared of alot of the risks with most of the meds and seeing as I live close enough to drive there, I am all about being in with the Hershey clinic, I will be calling my Dr on later today if he doesn't call me first anyway, hopefully by now he has had time to at least call up there and talk to that woman who does this. Who knows, maybe it will do nothing for me, but I'd rather try the safest option first!
05-11-2009, 07:58 PM   #45
straightpipe
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How long did the LDN take before those using it started seeing any improvements? I have been on it for 3 weeks and seem to be doing worse but from reading the thread that is not that unusual. I am still on 10mg of prednisone as well.
05-11-2009, 09:43 PM   #46
D Bergy
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The time frame can be up to six months. It all depends on the hundreds of variables that make the disease a little different for everyone.

Three weeks is not much time for LDN. Since you are also using Prednisone, I do not know what effect that will have. You are essentially using an immune suppressant and an immune booster simultaneously.

I think Kev was up and down for a few months. Not sure how he is doing right now, but since he has not been here much, I assume he is doing alright.

I started it with no symptoms so I experienced nothing. I am using it to keep myself out of trouble. It has worked for close to two years now.

Dan
05-13-2009, 04:35 PM   #47
Kev
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I am doing fine... just recovering from a cold/flu (and not swine, since I didn't crave truffles). My intro to LDN started off slowly, no immediate improvements/eurekas.
But, since my understanding (very limited) of how naltrexone works is that it just resets the immune system so it stops aiding crohns and starts attacking it slowly, that makes sense. I can't for the life of me see how it would work (your immune system fighting off the crohns for a change) if you are taking pred to suppress your immune system. I think LDN is strictly an either/or proposition.
05-15-2009, 07:25 PM   #48
straightpipe
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Thanks Dan and Kev, I see my GI this coming Monday and hope I can start tapering off the pred. Had a hard time convincing him to let my try LDN. Didn't want to push things when he finally gave the OK for LDN. Now I can push to get off the pred. I read on here where someone else started their LDN the same way. Oh by the way my name is Robert. I used straightpipe because back in 96 I had a fistula and that is what I had.
Does anyone know why in the Penn State trial you aren't eligible if you have had a ileocolic anastomosis? I had that surgery to correct the fistula. I was just wondering.

Robert

Last edited by straightpipe; 05-15-2009 at 07:31 PM.
05-19-2009, 09:45 PM   #49
RobK
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I'm currently on 13mg of Prednisone and trying to wean off. My GI was open to trying LDN and would like to monitor me a month a time.

Also on Specific Carbohydrate Diet (SCD)

Will post my progress.

RobK
05-20-2009, 06:22 AM   #50
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hi Rob and welcome nice to hear you have a GI who is in agreement with you trying LDN, so many of us have had such trouble getting it prescribed.

good luck with it - and yes it would be good to hear how you get on with it.
05-20-2009, 09:37 AM   #51
D Bergy
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What pain killers are you taking Pen, is there non-opiate substitutes?

Dan
05-20-2009, 10:49 AM   #52
D Bergy
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Now would be the perfect time to try it.

Dan
05-20-2009, 10:02 PM   #53
RobK
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Dan, I'm looking for Alpha Lipoic Acid supplement with no starch, dairy, gluten, etc....since I'm on SCD.

Do you know of any brands?

RobK
05-21-2009, 03:26 PM   #54
D Bergy
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I have never used or investigated ALA, so I know less than you do. I just heard of it myself.

I have heard that it can mobilize Mercury in your body. I am not sure if that is true or what it really means, but maybe take a look at it.

Dan
05-31-2009, 09:49 PM   #55
RobK
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On my second week of LDN and noticing small improvements. Blood in stool is very little and my energy has increased. Have also been able to cut down to 7mg of prednisone with no feeling of a flare coming on.

Have an appt with my GI tomorrow. He asked me to bring my daily journal and we'll also see if my blood test results show any improvment.

RobK
05-31-2009, 10:03 PM   #56
D Bergy
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Glad you are improving Rob. It does normally work slowly so you are right on track.

Keep us posted on your progress. We rely a lot on user reports for LDN since not many people are using it.

Dan
06-06-2009, 12:20 AM   #57
Debb S
 
I just registered with this forum after doing an internet search for LDN forums. I have UC which has been pretty much kept in control with mesalamine drugs (Asacol, Canana, Rowasa). I had been on Remicade for a year after a really nasty flare a couple yrs ago that put me in the hospital for 9 days. Was on that for a year before deciding the side effects were too severe to continue. Luckily, symptoms didn't reappear when I went off it. I do suffer from recurring fevers though (every other day), and looked into LDN as a possible treatment. I've had the recurring fevers for about 4 yrs, which disappeared with the Remicade. They are, however, now back with a vengence.

I attended a Low Dose Naltrexone lecture at a local compounding pharmacy a few weeks ago and learned a lot. It did sound like a miracle drug treating everything from cancers to autoimmune diseases. One thing that was mentioned though, was it is NOT meant to be a cure, but rather a way to keep a disease from progressing. A Naturalpath doctor gave the lecture, which gave me an idea. Rather than try to approach my GI with the idea of LDN, I decided to go through the list of Naturalpaths covered by my insurance to find one that had experience with administering and monitoring the drug. It was a very quick and easy process requiring a few phone calls. Within a week I had an appt. with a Naturalpath who prescribed me LDN. I've been on it 9 days thus far. So far the fevers are still occuring with their same intensity, but I realize its very early yet.

I just wanted to share with the group that finding a doctor who prescribes LDN doesn't need to be a drawn out ordeal with your normal physician. Regular doctors are very leery of prescribing a drug that doesn't have large clinical studies proving its effectiveness for Crohns or UC or whatever. The large pharmaceutical companies who normally fund such studies want no part of LDN because its a cheap generic drug that's been around for decades and they wouldn't make any money from it. So its kind of a Catch 22 situation.

Perhaps my GI would have been open to the idea of LDN, but even if he had been I would rather have a doctor experienced with administering and monitoring the drug. I will eventually tell my GI I'm on LDN, but in the meantime there's really no reason he has to know. This is my body, and I choose the treatment I want to undertake.

Hope this helps someone who wants to get on LDN.
06-06-2009, 01:00 PM   #58
D Bergy
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Thank you for the great information. I finally convinced a local doctor to prescribe LDN. No more 800 mile trips to a doctor.

I think it is good to remind us that LDN is not a cure, just a good treatment option.

I hope you do well on it.

Dan
06-15-2009, 11:19 AM   #59
elaineg
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Join Date: Jun 2009
My son has had CD since he was 9 yrs old. It went to severe stage within weeks. Have tried almost all standard treatments except remicade/humira (although they were certainly available) due to risks of cancer etc when given to kids before puberty. I was always searching for a better alternative because I just didn't want my son to be another statistic, who ends up with a resection or worse.

Recently he was fortunate enough to get into the FDA approved clinical drug trial at Penn State university with Dr Jill Smith treating kids with Low Dose Naltrexone . Although he was on the placebo for the first 8 weeks... we toughed it out in the name of science and then were allowed to go on to the real LDN drug and he is still on it. His life hasn't been this good/normal since before his diagnosis. He feels great and suffers no pain and eats/drinks anything except dairy with lactose, chocolate, and chinese food (all of which trigger diarrhea/fever in the past and we still actively avoid). He gets better each day.
I was hesitant to tell the rest of the world about any perceived benefits until I was certain he was much better. But I now want to tell everyone that he feels great and his bloodwork has improved each month. I am hopeful that it lasts and that he is going to be OK now and am grateful that this drug is available. I don't just want him to cope with maintaining this disease and having it flare up thousands of times in his life, we are looking for a cure. This is as close as it gets for now and I am hopeful it will work for others. The drug study still has room for other kids as far as I know.
06-15-2009, 11:22 AM   #60
elaineg
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I would've gone to the moon to help my son. I can handle the 5 hour drive each way. The Ronald Mc Donald house will offer families a place to stay while in Hershey PA. They are amazing.
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